How can you know? There might be better treatment out there!

I was sure that I was the best I could possibly be and that I’d received the best possible treatment for my type of pelvic pain.

But now, after a very successful sacral stim trial (of which I’m best writing more about later), I am left to wonder why I made up my mind and what it was that convinced me I was ‘doing great’ and reached the ‘best treatment‘.

I wasn’t, I hadn’t.

I know that living with pain for over eight years reduces confidence and belief. It even (warning, I’m going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)?

In the world of chronic pain, you hear this all the time; the longer the pain tune plays, the better your brain becomes at playing it. Was I influenced?

It’s difficult enough being a patient and navigating the pain treatment path but I would consider myself pretty ‘active’ and ‘aware’. Even still, I came so close to missing something monumental (assuming the permanent sacral stim is as successful).

How many more patients are tolerating pain levels they shouldn’t be? How many could be living a much better quality of life? How do patients reach professionals and professionals reach patients? How does a GP know there’s more out there, that there’s better treatment?

How can I not ponder the above thoughts after finding most of my own pain professionals, myself. And my current team, I really did meet by chance. Vicpain were not referred by another professional but rather a personal friend.

So then, that makes me wonder how many professionals are followers and how many are leaders? It’s the same in any industry, isn’t it?

As creative director of ooi, my personal work ethic was to put aside my personal design preferences when tackling a brief, shedding all influences and stepping into my client’s shoes. This was my way of assuring I was producing the best possible solution.

The other life commitment I made was to keep learning. I was a professional and I was expected to know how to work with my client and achieve (if not exceed) their expectations. It was a customised approach, not one focused on my company’s portfolio.

I recognise this formula in my current pain team. I see it, I hear it, I feel it. I feel now, with previous treatments, that perhaps all options weren’t considered. In my creative world, this would be a designer who offers a fashionable finish leaving the client with a concept lacking in substance and longevity.

As ever-present factors in any assessment, I must grant hindsight, the speed of research, time and place some acknowledgment. But, what I truly believe I’m experiencing is the difference between caring and treating and what divides people into leaders and followers.

From my perspective (and Theo’s), the result of my latest trial treatment amounts to hours more work, better quality of sleep, hours of adventure, hours of creativity, hours of thinking ability, thousands more footsteps.

It’s the difference between grams and kilograms, reading and not reading, flat shoes or heels. It amounts to more function, a squillion more smiles, tastier food, happier times, oh I could go on… so on… I won’t, because it’s sad.

When a chronic pain patient misses out on successful treatment, they’re actually paying for it with their quality of life.

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15 Comments

o how i feel so sad for all of you ! i am trying to find help for a friend w this. he is in his 70s & had radiation & surg for prostate cancer about 7 yrs ago. that went ok. pn pain started about 2 yrs ago and became a crisis a year + ago. this summer he was dx w bladder ca. everything is connected together so it’s no stretch to assume bladder is related to prostate issue. but i wonder if the blood supply to the pn via prolonged vasoconstriction is a set up for disease. i also believe that nerve pain can alsobe caused by inadequate blood supply to the nerve. in this case a blockage in the pudendal artery. gangrene is so painful people have cut off their own limb. couldn’t this be similar? wouldn’t arterial studies reveal this ? good god, if technology can make a blind guy see via his tongue, i would think pn could be totally cured ! go lay in front of the university doors! i believe your help is there, not in some old dr’s office. my friend has had chemo & will have surgery. i want him to have an arteriogram before the surgery & have any pn repair etc done when bladder done. why not try to fix them together ? how shitty it would be to wake up w no bladder and not be able to sit on your butt ! bug the best medical universities you brave souls.

o how i feel so sad for all of you ! i am trying to find help for a friend w this. he is in his 70s & had radiation & surg for prostate cancer about 7 yrs ago. that went ok. pn pain started about 2 yrs ago and became a crisis a year + ago. this summer he was dx w bladder ca. everything is connected together so it’s no stretch to assume bladder is related to prostate issue. but i wonder if the blood supply to the pn via prolonged vasoconstriction is a set up for disease. i also believe that nerve pain can alsobe caused by inadequate blood supply to the nerve. in this case a blockage in the pudendal artery. gangrene is so painful people have cut off their own limb. couldn’t this be similar? wouldn’t arterial studies reveal this ? good god, if technology can make a blind guy see via his tongue, i would think pn could be totally cured ! go lay in front of the university doors! i believe your help is there, not in some old dr’s office. my friend has had chemo & will have surgery. i want him to have an arteriogram before the surgery & have any pn repair etc done when bladder done. why not try to fix them together ? how shitty it would be to wake up w no bladder and not be able to sit on your butt ! bug the best medical universities you brave souls.

Hi Gwen, No you didn’t miss the exact name. I had a trial for a sacral stim (made by Boston Scientific). Where my previous stim is peripheral (just under the skin) and has 8 points in each lead, the Boston (almost 5 years newer) has 16 points in each lead. The leads also sit closer to the source of pain. It felt like surround sound pain relief as opposed to an old transistor radio. But once I’m implanted I’ll write more. Best to wait for the permanent unit.

Soula, thank you so much for your honesty, your questions, your insights – I gain so much every time I read your words! You are an inspiration to me. And this is a needed reminder that though I want to accept who I am and where I’m at right now, that I don’t have to stop the search for better. That’s true for all of us, not just those of us with pain.

I have been feeling really good lately, that’s when life is easy. But yesterday my pain levels notched up a bit, the concern and anxiety notch up a bit, the frustration creeps in a little. It is a reminder that all of that is ok, too. That life is not all sugar and spice and everything nice. But when it’s not nice, I cherish having a voice out there that speaks to me, that understands me, that helps guide me through those tougher moments.

I wish you didn’t know what chronic pain is like. But I am grateful to you for sharing your experiences, your thoughts, and yourself so that those of us with pain know that we’re not alone.

Ditto all the way to you my dear Jo! I read your comments and posts (here btw for everyone who hasn’t come across your amazing blog: http://www.mycuppajo.com/), and I’m energised, feel understood, that I’m not in this horrid world alone.
No, it’s not all sugar and spice but having someone empathise and actually respond and expand on your thoughts and feelings is so helpful. You know, it itches the spot!
If only none of us had met through this awful pain but at least we’re doing something about it. That would be far worse.
Thanks for stopping by and reassuring me I should keep expressing my thoughts. x

I haven’t been in touch since I saw Dr Courtney this time last year. In front of my brother and best friend, he PROMISED me a Pain Pump trial at the Western Hospital within a month. I waited, waited….almost 4 MONTHS later, he wrote and said that he was no longer working there and they would NOT be accepting Interstate patients any more!!
I am in crisis…bedridden with my icepacks, can barely walk to the fridge to change them and cannot even stand in one place for more than a minute.
A doctor at UCLA, whom you have probably heard of, Joshua Prager is having amazing results with the Pump, filled with Marcaine, a blood pressure med and v. small dose of Morph. I even have his phone number from a cyber friend who had been bed ridden for FIVE years. She is in her 2nd year with the pump, has married and is even working; she has her life back.
I most definitely have NOT ONE option here in Tassie. My GP comes to me of course and is so confused and “over it”, not knowing what to do for me….and I DO understand that, but it doesn’t help when he said last Thurs., I’m sorry but all I can do is send you to a Psychologist to help.
On Saturday I had a heavy fall, and SHOULD have been able to go for an x ray, but I have a a critical nurse friend, and she said that I had broken my big toe, so obvious to her, but mainly bruising other places. My toe is v painful, black foot even, but it is NOTHING. i could have a foot full of broken toes, but this heinous burning, spasming is ALL that I can feel.
I DO NOT want to die…and don’t worry, I am not suicidal, BUT……they short horses don’t they!!!
Cannot write any more but will keep in touch.
Oh, there a few women on the PN FB page who have vaginal suppositories with Marcaine etc. in them. Do you know of any compounding chemists on the Mainland??
I feel that this would go a long way to helping me a bit if not a lot.
Regards,
Jeanete

Thank you so much for that info on Vicpain. I would have to get a referral from here wouldn’t I? Also the compounding chemist…I honestly thought there was no such thing here. The US gals and guys have so many avenues for all sorts of treatments. I’m guessing that PainVic is Private?? Just my luck! With my broken toes, I have been depressed because it takes me all my time to get to the fridge for my icepacks in the first place, let alone on a walking stick, lol. I WILL give them a ring.
May I ask what is in your “magic” cream? Oh My God, they have even had me on heart spray that has a bit of anaesthetic in it! I wouldn’t know how on earth I would get over there again, but I HAVE to try!! My sister passed away very suddenly in April and I couldn’t even go to the funeral, but she would have understood. I guess I was meant to go to Dr Courtney because I hadn’t seen her for 8 years, because of this rotten thing, and I will always have the memory of her with open arms coming toward me on the only day I was over there. Do you get any good relief from the cream and where do you put it, to be crude?
Soula, I cannot tell you how desperate I am! Now my GP wants to be seen to be “doing something” so I will be off to a Gyny…why I don’t know,, but at least he can order an MRI which, would you believe I have not had in 8 years. I am beginning to think that my Scoliosis may have a lot to do with alignments etc as it has gotten so much worse over the past decade. At least two of the women on FB use vaginal suppositories with a compound of various things and are getting a lot of relief, so I am looking at EVERYTHING of course.
Talk later…..you’re a good lady 🙂
Regards
Jeanette

I’m hearing you. We are so often told to accept our pain. There is no cure. I was told without acceptance I would go crazy. I’ve tried so many things, traveling the world in search of answers to the point of collapse.

I have a stim, my second, from a different manufacturer working at a higher stim level, the latest on the market, so to speak. It has helped. But as I grow older, even a year, brings more challenges, theses I too addapt to. I feel my life is lived in increments, planned, then sometimes it just can’t be, a flare will dictate.

I’ve been offered a second device to be implanted in another area. I just don’t know. I’m also looking into stem cell treatment. After 11 years of torture and three surgeries, I’ve learnt one has to be one’s best advocate.

I’m constantly confused by chronic pain. Just when I think I understand what is happening to me the goal posts change. The nervous system is so very complex as is the scar tissue that grows and becomes problematic after the smallest procedure.
I have a wonderful Pain Management Doctor who knows my personality well by now and that helps a lot.
One day at a time, for me, not giving up, still searching, but smelling the roses even when things progress, it’s all I can do. We are all different. My latest challenge is bladder control, dignity! Pain ! Isolation cycle starting again because of this…..I will beat it!

The way your reply flowed Lisa is so similar to the way my brain works. I actually smiled as I read that. Winding, changing and flipping from the positives to the negatives but thankfully, you and I both, land at the positive mostly, and we can continue to fight.
One day at a time, some days it’s one minute at a time.
Thank you again for your beautiful comment and energy xx